Category Archives: Advocacy and Health Policy

Oct. 1 marks the much anticipated launch of MNsure, the state’s new health insurance exchange. You may have recently seen ads and billboards featuring Paul Bunyon and Babe the Blue Ox talking about MNsure and encouraging Minnesotans to sign up for health insurance. That’s because under the Affordable Care Act (ACA), everyone is required to have healthcare insurance starting in 2014. Beginning Oct. 1, Minnesotans will have a new way to shop for health insurance coverage using MNsure, our state’s health insurance exchange.

So, what is MNsure? It’s an on online marketplace that you can use to compare plans and costs, enroll in public programs and purchase your own health insurance.

Who can use MNsure to buy policies? Individuals who don’t have health insurance, Medicaid recipients and small businesses with 50 or fewer employees can use MNsure.

How does this affect Children’s patient families?

If you currently have health insurance, you will likely see no change.

If you are enrolled in Medicaid already, you will be automatically transferred into the exchange for the first year. You will need to re-enroll for Medicaid through the exchange the second year.

If you do not have access to affordable coverage you can sign up for coverage through the exchange.

Low-cost plans, financial assistance and tax credits are available for those who qualify.

If you do not purchase health insurance you will be subject to a tax penalty.

Things to consider when picking your plan

Costs (premiums and out-of-pocket): MNsure users will be able to choose from a number of different plans: bronze, silver, gold or platinum. The various levels are based on the percentage of costs that the plans will cover. Be sure to pick a plan that works best for you and your family.

Access to health professionals: You will be able to look up your current pediatrician or provider on the MNsure website to ensure they participate in the plan you choose.

Children’s is here to help! Our financial counselors are being trained to help patients and families apply and enroll in health insurance through the exchange. They may also refer families to the MNsure Customer Service Center. Patient families can contact our financial counselors at the phone numbers listed below:

Minneapolis: 612-813-6432

St. Paul: 651-220-6367

The MNsure Customer Service Center: Customer contact specialists will be available to answer any questions online or through a toll-free number: 1-855-3-MNSURE (1-855-366-7873)

Monday – Friday: 7:30 a.m. – 8 p.m.

Saturday: 9 a.m. – 4:30 p.m.

Assistance will be available in English, Spanish, Hmong and Somali. Additional interpreter services are offered in more than 140 languages.

We read and hear about bullying in the news daily. But, what is bullying, exactly? Is it conflict? Picking on someone?

Emily Bazelon, a New York Times best-selling author of “Sticks and Stones: Defeating the Culture of Bullying and Rediscovering the Power of Character and Empathy” and Slate contributor, defines it as verbal or physical aggression that is repeated over time and involves a power imbalance.

Bazelon addressed approximately 130 health professionals, lawmakers, researchers and educators at the Minnesota Children’s Museum on Sept. 11. The event built upon work Children’s Hospitals and Clinics of Minnesota has done around bullying, including a report released earlier this summer: “Understanding the threat of bullying.”

Here are some noteworthy messages from the evening:

Social media is a vehicle for bullying. But if it’s happening online, it’s probably happening offline, too.

For the target of an online bully: The Internet makes it feel like bullying is happening 24/7. It’s permanent and visible, and it can potentially reach a bigger audience.

For the online bully: He or she doesn’t have to look the target in the eye, there’s no face-to-face feedback and it can be anonymous.

We spend little time talking about whether social media companies need to play a role. That needs to change.

We need to send the message to kids that bullying isn’t normal behavior, and it’s not something everyone does.

Bystanders who watch bullying often have the most power to stop it. Bystander kids intervene about 20 percent of time.

A message for kid bystanders: You don’t have to be a hero. A thoughtful or empathetic message like “Are you OK?” can be helpful.

What do we do about bullying? Bazelon emphasizes prevention and intervention, which can’t be done in a day. We need to help shape who kids are.

Kelly was bullied every day. First on the school bus. Then in her classroom. She was called “every name in the book.”

It went on for months, and her parents never knew.

Then, one day the bullying turned physically violent. Kelly was sitting quietly at her desk, her mom Lynn Miland described, when a student began repeatedly hitting her in the head. A teacher had to remove the student.

“I felt helpless to protect my daughter,” Miland said.

While Kelly had been bullied previously for months and months, it escalated when she moved to high school, Miland said. Transitioning from one school to another is a common time for kids to be bullied. And Kelly, on the autism spectrum, was an easy target.

“It can be hard to be different in any way especially during the early teen years,” said Dr. Michael Troy, Medical Director of Behavioral Health Services at Children’s Hospitals and Clinics of Minnesota.

While anyone can be bullied, targets of bullying have some common traits, including being different in behavior. Children who act differently due to developmental problems, psychological conditions, behavior disorders or aggressive medical treatment can be targets.

During early adolescence, anything that makes a child different from most of his or her peers is potentially problematic, even positive differences like being tall or smart, or having a musical talent, Troy said.

But, it’s especially hard for children with physical or mental differences who can’t modify them, he said.

As an adolescent, learning to negotiate the social world is a key developmental task. Something like autism spectrum disorder can make social communication difficult, Troy said. Consequently, since this is a time when the demand is greatest to learn and use social skills, it can also be a time that kids on this spectrum can be especially vulnerable to bullying.

Additionally, other kids who may be feeling insecure about their own social status, may resort to teasing or bullying peers they see as more vulnerable in an attempt to protect their own fragile self-esteem, Troy said.

When Kelly was initially bullied, her teacher told her to ignore it, Miland said. Kelly took this suggestion quite literally and didn’t say anything to anyone, even as the bullying continued to escalate.

“Never should a student who is being bullied be left to resolve a bullying situation. It’s really about an imbalance of power. If the adults don’t step in, it can really escalate,” Miland said.

After the incident and talking with school authorities, she reassured her daughter she wouldn’t be bullied again. But, when Kelly’s bus arrived near their home, it carried the same student who had been bullying Kelly for months.

That was a red flag, Miland said.

Miland turned to the PACER Center for help. The Minneapolis-based nonprofit had recently launched its National Bullying Prevention Center (PACER.org/bullying), which offers a variety of web-based resources for parents, students, and educators to deal with bullying situations.

“I was very grateful for the help I received because at that point, I didn’t know want to do,” she said of PACER, which she later joined as a parent advocate.

She then requested a meeting with school leaders to determine ways to keep her daughter safe.

“Fortunately, the school responded in a very positive way,” she said.

School leaders and Miland made sure Kelly wasn’t alone and established positive relationships with peers and school staff she could go to and trust if she felt unsafe. They also looked out for her.

To help Kelly adjust to returning to school, Miland gave her a note card with something positive written on it every day. The card also included names of people she could talk to in times of need.

Years have passed since the incident, but Kelly still remembers what she wore the day it happened.

When there’s an upsetting and unhappy memory, the more a child’s life is filled with rewarding social experiences, the less central the painful memory becomes by comparison, Troy said.

If you notice a change in behavior, talk to your child. Kelly stopped wanting to go to school and wouldn’t say why she became isolated. That was a red flag.

Talk to your child about what bullying is and, if it’s happening to them, give them strategies so they can talk to parents, teachers and other adults.

Parents should report bullying to the proper authorities and put it in writing so there’s an investigation and follow-up. The report should include the name of the bully, when and where the incident occurred and any bystanders who may have been present. If cyber bullying occurred, include the information in the report.

Work with the proper authorities so there’s a plan for the child to feel safe.

Check out Children’s newly released report on bullying, which includes a guide for parents. For more tips on bullying prevention, visit PACER.org/bullying.

Eleanor Christiansen and her husband Tyler got an unexpected crash course in hospital life.

Their usually healthy daughter, Greta, had few reasons to go to the doctor. Then, in January 2010, she developed croup and landed in the Emergency Department on the Minneapolis campus of Children’s Hospitals and Clinics of Minnesota.

Croup became secondary pneumonia. The ventilator became ECMO, which acts as a replacement for a child’s heart and lungs. An emergency visit became a nearly month-long stay in the hospital, with two-and-a-half weeks in the pediatric intensive care unit (PICU).

“Had she been somewhere else in the state, somewhere else in the country, there was a really good chance we would have lost our child,” Christiansen said. “We have this well of gratitude that we’ll always be able to tap and will probably never run out.”

Christiansen is about to begin her third year on the Family Advisory Council – showing her gratitude in a big way. The council comprises families whose children are past or current patients at Children’s. The group meets once a month for two hours for 10 months of the year.

Its members draw from their own experiences to make those for other families even better. The council recently created a resource guide for families. They’re currently working on a project to help families, especially with those who have special needs and may have equipment, access the hospital more easily.

“We provide a voice that nobody at the hospital can provide and be a real powerhouse of change,” Christiansen said.

Every member’s experience – the good and the bad – is important to the council, Christiansen said. And every story is important, too.

Stories like those of Michelle and Chris Jackman. Their daughter Samantha was born at 24 weeks gestation weighing a little over 1 pound and spent 128 days in the neonatal intensive care unit (NICU).

She quit her job to stay home and care for Samantha and during that time joined the NICU experience team in St. Paul. When she transitioned off the team, she joined the council.

“I wanted my experience and my knowledge to have some meaning and to have value,” Jackman said. “One of the things I’ve just loved about Children’s is that they’ve allowed me to find that value in that experience I had.”

Not every experience during their four-month stay at Children’s was a good one, Jackman said. But for every negative experience, there was a positive one, she said.

“I realize how fortunate I am on a million different levels. How fortunate I am in my personal experience. How fortunate I am to have a place like Children’s to bring my child,” Jackman said.

Today, not only does she feel like she gets to help Children’s, she is grateful for the opportunity to share her story with others.

“Personally I wouldn’t be involved with the Family Advisory Council if I didn’t believe Children’s values the opinions and the work we do,” Jackman said. “I’m here because I know that they really value what we say and what we do, and we do have an impact.”

Hardly a day goes by when we don’t hear a story about bullying: from television reports, to pending legislation, to our own children coming home with tear-streaked faces. For most, school is out for the summer and while our attention to this pressing health issue may wane during the next few months, the problem of bullying doesn’t disappear.

Today, we released a report on the health and developmental impacts bullying has on kids in our communities.

We know that kids and parents struggle with how to address this issue. From a developmental perspective, it’s important for children to learn how to resolve conflict independently. The trick for all of us is to understand when a conflict is no longer healthy and to intervene appropriately. We discuss this idea in the paper and offer some developmentally appropriate guidance to parents (see below) to monitor for and address bullying-related activity with their children.

So how do you do that? Here’s adapted guidance from the American Academy of Pediatrics and other experts on how to address conflict resolution and bullying.

Preschoolers (ages 5 and younger)

Parents can help their child handle conflict by teaching them to:

Share

Use language rather than action to express anger or feelings, and

Respond to physical aggression by another child by saying, “That hurts. Don’t do it.” Seek the help of an adult.

Grade school (ages 5-12)

To assess whether a child has been involved in bullying, parents should ask and consider enlisting others to help if the answers reveal that a child is experiencing bullying:

Have you been involved in any fights?

How do you avoid (or not avoid) getting into fights?

Are you afraid of getting hurt or bullied by other children?

How would you react if you saw a fight or bulling incident?

If responses to these questions are concerning, consider some of the following as next steps:

If the child is reluctant to talk about bullying, it may make sense to get a counselor or pediatrician involved.

Once the child talks about what happened and identifies the bully or bullies, contact the relevant teacher and/or administrator to develop an approach that works in the school setting and is comfortable for the bullied child.

Parents also need to stay on top of these issues as the child gets older. When their child is in second grade, parents should:

Assess if their child has a regular group of friends.

Ask what happens when friends disagree.

Be familiar with those friends, and

Observe what happens when your child is with those friends.

By fourth grade, it’s especially important that children develop self-esteem and feel good about themselves. Parents should observe if their child is:

Unhappy or withdrawn,

Unable to listen or do homework, or

Engaging in destructive behavior.

Middle school (ages 12-14)

Kids need to be encouraged to talk, but may be reluctant to be open and honest if parents or pediatricians come on too strong.

What parents can do:

Some questions for older kids might include:

How are things going at school?

What do you think of the other kids in your classes?

Does anyone get picked on?

Effective action

There are a number of actions parents can take once they determine their child is a target of bullying. These actions range from teaching kids social skills and building their self-confidence to knowing when and how to contact the school or law enforcement authorities.

We hope this report will contribute to important ongoing discussions happening in our state on how to best address bullying. If you’d like to learn more about our in-depth review of how bullying impacts the health of Minnesota kids, visit childrensmn.org/bullying.

Describe your job as director of Children’s advocacy and health policy. As the director of advocacy and health policy, my job is to oversee our government relations, policy and community engagement work. I work with a great team — Kelly Wolfe who manages our lobbying and public policy efforts and Katie Rojas-Jahn who coordinates our community benefit work, social media efforts and participation in community/advocacy organizations. Together, we work on legislative issues that impact Children’s and children’s health at the state and federal level. We also work to understand the needs of the communities in which Children’s operates and kids across the state and develop plans for addressing those issues. Part of our work is focused on building advocacy interest within Children’s among employees, patients and families so I get the opportunity to present to and learn from medical professionals, our Family and Youth Advisory Councils and others within the organization about what matters to our Children’s community. At the end of the day, my job boils down to advancing and protecting our organization and kids’ health in the legislative arena, making sure we’re the best community partner we can be and equipping people to be effective advocates for children.

Anna Youngerman

Because of your role, you spend a lot of time at the state Legislature. What did you take away from this session? There were a lot of pre-conceived notions about what this state legislative session would yield because it was the first time in more than 20 years that the Governor’s Office, House and Senate were entirely in DFL control. For example, many in the healthcare community thought this would be the year (after more than a decade of cuts) that health and human services would see funding increases but, instead, legislators wanted to cut it again. In the end, Children’s and children’s health issues ended up doing fine, but what it showed is that the process is always unpredictable, it takes a lot of active monitoring and heavy lifting to make sure we come out OK in the end.

Your job extends beyond Children’s doors. What does that mean? Most of our work is focused on efforts outside the walls of Children’s. On the policy side of our work, we spend a lot of time with legislators and administrators to help them understand what Children’s does, why we’re unique and what we need on a legislative level to continue doing what Children’s does best. For those folks, our team is often “the face” of Children’s (for better or worse :)). We also spend time working with other organizations who have common interests, including public health leaders, health advocacy organizations and other health systems.

What drew you to Children’s? I had the opportunity to work with Children’s in my previous job and had a great feeling about the organization. I was interested in using the advocacy skills I’d developed to help drive a singular cause forward and, with Children’s, there is a strong commitment to the organizational mission of serving children. My sense of this place has absolutely been affirmed – everybody lives and breathes kids. I wasn’t a mom when I started but now that I have a little one of my own, being able to advocate on behalf of this organization is even more of a pleasure.

What is your favorite memory from working here? I don’t have one memory but rather a collection of experiences that have been powerful to me. It sounds hokey, but I often find myself in awe of this place. Walking through the cafeteria, participating in a meeting with clinicians, hearing from a doc about an issue he/she wants to address, listening to a family’s experiences, even talking about healthcare reform — in all of those encounters, I get to see and hear how amazing the kids, parents, nurses, doctors and administrators are when it comes to doing what’s right for kids.

At Children’s Hospitals and Clinics of Minnesota, we pride ourselves in getting the best outcomes for our patients. That includes keeping patients healthy so they don’t require extra visits and expensive procedures.

We have a long-standing commitment to innovative care delivery, which triggered our willingness to partner with the Minnesota Department of Human Services to test a new delivery and payment model aimed at better health outcomes and lower costs for our state’s Medicaid program. The shift in approach is to tie payment to delivering higher quality outcomes rather than relying on the historic model of publicly-funded health care programs in Minnesota where health care providers were paid for the procedure.

By participating in this new payment model, our job at Children’s will be to manage the care of 14,000 patients. Rather than a system that creates an incentive for more visits and procedures, the total cost of the care model creates an incentive for us to advance methods that keep people healthy so they don’t have to use expensive services.

The cool news is that we’ve already been doing this for nearly a decade. Children’s established the state’s first Medical Home in 2004 and this care coordination model has resulted in reduced hospitalization and fewer readmissions, among other outcomes.

“With nearly a decade of experience to draw on, Children’s is pleased to partner with the state on an approach that financially rewards better health outcomes,” said Maria Christu, General Counsel and Vice President of Advoacy and Policy at Children’s. “We are confident we’ll deliver on the quality outcomes the state and, more importantly, our patients expect.”

Minnesota is the first state in the country to implement this new payment model. “This new payment system will deliver better health care at a better price. By changing the way we pay health care providers we can incentivize reform, help Minnesotans live healthier lives, and slow the rising cost of health care in our state,” Gov. Mark Dayton said in a statement.

This model is being implemented at the same time as Minnesota’s Medicaid population is expected to increase. Gov. Dayton’s budget proposal, which we wrote about last week, includes expanding Medical Assistance to 145,000 more Minnesotans, including 47,000 kids.

I was born with transposition of the arteries in my heart and had surgery to repair them when I was four days old. In fifth grade, I had another surgery to repair a narrowing of my aorta. And in November 2010, I got a pacemaker. It’s possible I’ll have another surgery in a few years to make my aortic valve stronger because it’s expanding and beginning to tear.

I’m only 18.

Given the number of medical issues I’ve faced during my short life and still face, I’ve learned how important it is to advocate for yourself in the hospital. It’s important for a few reasons. First, your doctors and nurses then know what’s going on with you and can help you. Second, you can help the hospital itself improve.

One of the ways I advocate is by participating in the Youth Advisory Council (YAC) at Children’s Hospitals and Clinics of Minnesota. I’ve served on YAC for three years. I love Children’s, but I joined YAC because I thought I could make the hospital even better.

I believe I’ve made a difference in the lives of patients at Children’s. One way I’ve done that is by helping with the creation of the new teen lounge on the Minneapolis campus.

At meetings, I’m not one to be shy. I’m always asking questions. When I know a friend is going to the hospital, I ask him or her to give me feedback. How was the visit? Could Children’s have given better care? How? I bring the answers back to YAC.

Someday, I see myself advocating for others. And it’ll be at the bedside. I’m interested in going to medical school and specializing in cardiology. After my years of experience being a patient and a YAC member, I think I’d bring a unique perspective to the medical field.

I often tell people, “If you want something done, the only way people can know you want something done is to tell them. You’re the only person stopping something from happening.”

Mark Olson, 18, is a Youth Advisory Council Member at Children’s Hospitals and Clinics of Minnesota and a patient.

As the Star Tribune so beautifully illustrated with its Thanksgiving cover story, “Home After 98 Days In Preemie Land,” the issue of prematurity is a heart-wrenching and persistent challenge for doctors and parents-to-be. Preterm birth can, and does, affect every race, ethnicity, religion, age, socioeconomic status and demographic.

Here in the Upper Midwest, more than 200,000 babies are born every year. And about 22,000 of those babies or little more than 10 percent are born premature. However, as a preterm infant, you couldn’t ask to be born in a better place than Minnesota. We have some of the highest survival rates in the world, and yet we received a “B” on the March of Dimes 2012 Premature Birth Report Card. Why? Because even though an infant born beyond 28 weeks gestation, or 7 months of pregnancy, has a nearly 100 percent chance of survival, these infants still remain at risk for respiratory problems, feeding issues, developmental delays and behavioral and social disabilities.

Unfortunately, the amazing medical progress we’ve made over the past 25 years, which lead to the improved outcomes for so many premature infants, has begun to plateau. Now we as health care providers need to take the lead and drive future improvements.

There will always be high-risk pregnancies, and ensuring the best outcomes for these scenarios is not dependent upon reducing the prematurity rate alone. We need to be proactive and provide optimal care to both mother and baby, so that we can decrease the incidence of prematurity and improve the outcomes of those born early or with complex medical conditions. In short, we need to address the needs of the infant long before a mother’s due date.

In early February of next year, Children’s Hospitals and Clinics of Minnesota and Abbott Northwestern Hospital will open The Mother Baby Center in Minneapolis. It will be the first of its kind in the Upper Midwest, and one of only a few in the nation where mother-baby care is fully integrated. This new Center will bring together maternal and infant specialists, with the understanding that every pregnancy has the potential to be high risk.

With a proactive approach, the goal is clear: optimize care from conception to delivery. This means the sharing of information across all nine months of the pregnancy whenever possible. It means providing quick access to specialists when concerns for the health of either the mother or baby arise. It means collecting data to look at the root cause of prematurity in our own community. It means collaborating in clinical trials that start at the first obstetrical visit and end in the pediatrician’s office at school age follow-up. And it means continuing to incorporate the latest technologies and therapies on the Newborn Intensive Care Unit (NICU), while simultaneously measuring their effects and proving their validity.

While simple in theory, these are lofty goals that are difficult to implement and execute, but are well worth the effort. As physicians we must continue to set the bar high and help moms achieve term delivery whenever possible, while at the same time improve the care for the babies that are born early. In doing so, we’ll create a recipe for success that will provide enormous benefits to Minnesota babies and families.

Dr. Bendel-Stenzel is a neonatologist and co-director of clinical research for the Newborn Intensive Care Unit at Children’s Hospitals and Clinics of Minnesota in Minneapolis.

You’ve been hearing about the election for months. Maybe you’ve already registered to vote (if not, no worries, you can register at the polls). All that’s left is to wake up next Tuesday morning and head to your local polling place (need help finding it?)

That’s right, next Tuesday, Nov. 6, is Election Day. For many of you, this is the first time you’ll be able to vote. As a new voter, you can bring the issues that matter most to you and your family right into the booth. When you vote, you can be a voice for kids.

How does that work?

Making sure that elected officials help protect and promote children’s health means that we need to participate in the democratic process and speak up for the issues that matter to us. Voting is a critically important part of this advocacy. Your vote matters and the Children’s Advocacy and Health Policy department can help by keeping you up to date on some of the most important policies that affect kids’ health.

Why do young advocates matter?

Last year, Children’s Hospitals and Clinics saw more than 120,000 children and teens. That’s more than the entire city of Rochester. Unfortunately, the majority of them can’t vote. They can’t cast a ballot for the person they think will protect them, and you, the most. But you can.

You are the one with the experience, who knows what’s important to children who are sick or to the family of someone who is. Use this opportunity to advocate for all those who can’t advocate for themselves.

And every vote counts. In fact, during the 2010 election, three races in Minnesota were decided by fewer than 100 votes. If 100 Children’s patients were able to vote, it could have changed the result of the election.

So how do elections impact you?

Every year, our elected officials consider laws that directly affect you. In the last five years, laws regarding seatbelt use, concussion safety and smoking in restaurants have all been passed at the state level. Legislation at the federal level is also extremely important: in 2012 a bill that would help address drug shortages was passed into law. The impact of this law on kids’ health is big: many kids at Children’s depend on those drugs for life-saving treatments.

In addition, legislation is often considered that impacts the funding we receive to train doctors and nurses that care for our kids, as well as our ability to offer all the great programs we currently provide like the Arts and Healing program.

We want to know how your first experience at the polls went! Tweet us @ChildrensMN or post on our Facebook page with a photo of you wearing your “I voted” sticker and let us know what it was like.

Continue to be a voice for children

After Election Day, you can stay engaged by joining Children’s Advocacy Network. We make being informed easy: You’ll get an alert whenever your involvement can make a difference! You’ll also get periodic updates on progress on issues and how your elected officials voted on measures before them.

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Children's Hospitals and Clinics of Minnesota is registered as a 501(c)(3) non-profit organization. Contributions to the Children's Hospitals and Clinics of Minnesota are tax-deductible to the extent permitted by law. Our tax identification number is 41-1814223.